Why get involved in clinical trials? Read Michael’s story

Michael Broad has Parkinson's, and explains his involvement in a pioneering trial currently being run by the University of Plymouth

20 May 2019

Parkinson’s does not define Michael Broad – he’s been a keen photographer, climber and cyclist, and has enrolled in many online courses to improve his knowledge of the condition.

And since being diagnosed in 2013 he has taken part in a number of clinical trials to help find ways of alleviating symptoms and slowing progression of Parkinson’s, most recently PD-STAT led by the University of Plymouth.

PD-STAT investigates whether statins – which are typically used to lower cholesterol in the blood – might work as a neuroprotective treatment, and is run at 23 hospitals nationwide. Participants are given either simvastatin or a placebo, and the trial is double blind, which means neither the researchers nor the participants know which one they are taking until the end of the trial.

Run at sites from Cornwall to Newcastle, the trial is led nationally by Dr Camille Carroll, Associate Professor in the University of Plymouth’s Institute of Translational and Stratified Medicine (ITSMed) and Consultant Neurologist at University Hospitals Plymouth NHS Trust (UHPNT).

Dr Carroll said:

“Simvastatin is a cholesterol lowering drug which evidence suggests might possibly protect nerve cells in the brain from injury or loss. In this clinical trial, we want to see whether simvastatin has the potential to slow or halt the progression of Parkinson’s disease – and it’s only thanks to the help and participation of people with the condition, like Michael, that we’re able to find out.”

The trial is managed by the UKCRC registered Peninsula Clinical Trials Unit at the University of Plymouth, sponsored by University Hospitals Plymouth NHS Trust (UHPNT) and funded by The Cure Parkinson’s Trust and the JP Moulton Charitable Foundation.

The trial is about halfway through, leaving the researchers to collate, analyse and share their findings in a series of papers in the coming years. As one of 235 participants nationwide, and having just finished his last visit, Michael tells his story.

“I’m from a village called Thurlstone, near Sheffield, and I first heard about the trial in an email from Parkinson’s UK, so I registered my interest with Leeds General Infirmary, part of Leeds Teaching Hospitals NHS Trust, to be assessed for suitability.”

In Leeds, the trial was led by Dr Jane Alty and research nurse Caroline Peacey.

Michael explained:

“The research team were looking for more than 200 people to take part, which they fortunately managed to do. Trying to get enough trial participants often causes delays to research, but I’d encourage anyone who can to get involved. The staff have treated me with such respect from the very beginning and answered any questions I had.”

At the start of the PD-STAT study, when they receive the trial medication, participants complete a number of questionnaires and motor (movement) tests, including a walking test and a finger tapping test. Then they attend a further six clinic visits after 1, 6, 12, 18 and 24 and 26 months, where they are asked about their health and any medication they are taking, as well as repeating the questionnaires and motor tests. For four of the clinic visits, the participants are asked to omit their usual PD medication, so that the researchers can get a true picture of their condition without it being masked by their normal medication.

Michael continued:

“The longest visits are the ones while in an Off State, your Parkinson’s medication needs to stop the night before attendance at the research lab, where you begin tasks to compare with the original baseline visit. Once these have been completed your medication is resumed, and approximately an hour after – dependent on the individual’s recovery time – some of the tests are repeated. The team goes to great lengths to ensure that your health is checked; you never feel neglected and always have communication with the team when at home.

“Whilst on this trial I received a request from the clinical trials unit to take part in a genetic sub-study linked to PD-STAT so off I went on that one too. I understand that what I do is not for everyone, but we can’t just sit and look on, more need to get involved and assist where they can. I feel really positive about the future of Parkinson’s research and with more support, we can bring about better interventions and treatments sooner rather than later.”